Dear Sharon,
Our son is not normal. I don’t want to go into details, but we’ve realized for some time that he has “special issues.” My question is not about him, it’s about us. We are overwhelmed and depressed and to say “disappointed” is to understate the reaction we’ve had to the discovery that our child is not what we were hoping for or expecting.
My husband and I are trying to navigate the difficult road of special everything for our boy and we’re not doing badly, but it’s how it’s affecting my own state of mind, our marriage, and our other child that worries me terribly. The added stress is enormous and I feel myself sinking into despair.
Can you give me any advice as to how I can cope better with the burdens, decisions, and responsibilities that I find suffocating?
Dear Mom,
Juggling the needs of a child with special needs can be overwhelming and discouraging to any parent. Thank you for being so honest about what it has been like for you.
Here are some ideas that might help.
The loneliness of being a parent with a special needs child can be one of the hardest aspects of the job. Many organizations that provide services for children with special needs also have parent groups that meet regularly. I hold two such groups at Parents Helping Parents but there are other places to find meetings as well. For example, the central branch of many of the libraries throughout the metro region run regular workshops for parents of special needs children.
Groups such as these can offer moms and dads an opportunity to learn that they are not alone with their stress, questions and concerns. Groups can also provide an excellent way to get emotional support and practical advice from experienced parents.
If you cannot find an in-person group that meets your needs, then the internet can offer online support. One source for this kind of information is www.comeunity.com.
Through contacts with other parents you might make friends with people who also have special needs children. Such relationships can really help. When someone in your life “personally understands” the challenges you face it can make a big difference.
It’s also important to try and juggle your son’s demands with the needs of the other members of your family.
It is especially important that you and your husband have regular “dates” so that you can enjoy each other’s company and get a break from the pressures you face. This might involve hiring a baby sitter or asking friends or relatives for help but it is almost essential. When mom and dad are more connected and have a little time to relax, things go better for everyone.
It can also help to spend time alone with your other child. You both need to remember that life is full of things that are not about special needs. One mom I know sets up her schedule so that she spends at least one afternoon a week alone with her “typical” child doing things he likes to do. Although that has taken a great deal of effort to arrange, it has improved everyone’s mood at home. Sometimes, at the end of your fun time, it can be good to give your other child the opportunity to express how he or she is feeling about having a sibling that is a bit different. The opportunity to do so can help relieve some of the stress as well.
As a parent of several “special” and “typical” children, I have come to realize that “special” is an excellent description. Like you, I did not always feel at ease with the work I woke up to each day, but I learned that there can be something quite wonderful about a little one who has unusual challenges.
Sometimes the bonds between parents and their special-needs children grow incredibly deep and strong over time. I am not sure of all the reasons that this can happen, but perhaps the opportunity to love and give so much to a little one is an amazing gift for a mom or dad, even with the overwhelming work and emotional strain.
Thank you so much for your question, I wish you all the best as you continue to care for your son.
Sharon C. Peters is a mother and director of Parents Helping Parents, 669 President St., Brooklyn (718) 638-9444, www.PHPonline.org.
If you have a question about a challenge in your life (no issue is too big or too small) e-mail it to Dear Sharon at SWeiss@cnglocal.com.
